Annual check up

Thanks Sharmin, i wish all our kids good results too and wish you a safe trip dear, i am sure we will soon hear good news about little A. Good luck


Zaini

Thanks my friend  . Actually Ahmad was only on supplements and carao. I do believe that carao is doing something because he never had his HB 7.1 (last month) on his own. I would have loved to test the effect of any treatment alone to be able to evaluate it and also would have loved to continue with the carao alone, but i was afraid,the spleen would deteriorate more so i had to start the hydrea.

Andy

But what makes the retics count increase in the first place though he is in the same range of his HB

For example his reading for the previous months:

HB 6.5  Retic count 12.6%  (July 2008)
HB 6.5  Retic count 3.7%  (September 2008)
HB 6.6  Retic count 9.3%  (October 2008)
HB 6.2  Retic count 5.8%  (December 2008)
HB 7.1  Retic count 6.4%  (January 2009)
HB 6.1  Retic count 7.8%  (February 2009)

Please advice

manal

Manal,

I was actually talking about the treatment where you bought injections or meds from Germany i believe? I am sorry i don't remember exactly what was that called,you met a doctor somewhere and i think it was after you started hydrea,and then you stopped hydrea for that treatment?I hope i am making any sense  .

Zaini.

You are totally right Zaini

It is the biological treatment. Actually i finished the first course with no significant change in the HB, and with no side effects at all. All i can say is that during this time he was very active and growth rate was very good. It may have helped him in other ways (activity, bones, antioxidant  effect, actually i don't know ... as there is no test that can tell that).  I have another course left  didn't decide what i will do with till now

manal   

Hi Manal
All the best with hydrea. Ahmed is growing and his body is working harder to maintain his hb. This is the reason his ret count is increasing although his hb is the same. Manal,do not wait to see the effect of one thing be it hydrea or carao or anything. Just give him anything and everything that will benefit him. Wishing that Ahmed`s hb the next time is the highest you have on record.
take care
maha

Hi Manal,

I hope the hydroxyurea works for him. You will be in my prayers.

  Kathleen

Maha, your explaination makes a lot of sense to me and you are right. Thank you so much for making it that clear


Kathleen, thanks dear so much 

manal

Hi Manal

May hydroxyurea help Ahmad.  It is good to hear that his growth is good.  May his results be even better next time.

Take care
Jade

Thank Jade so much for your wishes, they mean a lot.

As for our visit to the endocrinologist, She said that his growth rate is normal and constant till now. She is happy with him except for the very significant jaundice he has these days. She said that she will see him in 6 months instead of 3 months.

Talking to her about the DEXA, she didn't advice doing it at this age at all claiming that all the exact references are for adults and we will be degrading him if we did it. Unfortunatly, she told me that in a way or another the bones will be affected by time due to the chronic anemia, but she said we are doing all our best  by keeping his levels (calcium, Vit D, phosphrous...) in the normal range.

I asked her about the trunk measurment (it was said in Singapore that it is very important to keep measuring the trunk in the sitting position and standing position especially those who are on desferal)
She told me that it is done here, but actually not that accurate and it is okay if i want to do it. So i will be doing it on my next visit to her in August.


As for the dentist visit, She told me that there is a mild protrusion in the upper jaw but it could be for a normal reason as he changed the lower incisors teeth but not yet the upper ones so this could be a cause for this. She will be able to confirm after he changes his teeth.

When she saw my daughter ( she is not a thal ), she told me that she has a very clear protrousion in the upper jaw. Therefore she said that i should not keep Ahmad's mild protrsuion in mind since she can not confirm at this age whether it is inherited like my daughter or due to thal or due to changing the teeth.

Anyway, she said that since she sees him twice a year for cleaning, she will be observing any changes.

The dentist told me that there are ways to adjust the the jaw back. But do you think this is advisable for a thal or useless since the cause is always there??

As for now i finished all the checkups, but actually i don't know why i don't feel good. I am really overloaded. Hope to get rid of this feeling.

Thanks for all yor feedbacks and wishes

manal 

Manal,

I can understand what you are feeling,be strong my dear,you are doing whatever is in your hands,and you are doing it best,fate is in Allah's hands.

Manal,I was just thinking,that have you ever considered transfusing Ahmed,if not regularly,but once or twice a year,to help his system be relieved of that much stress? I know transfused blood doesn't last that long,but i think it might help.Just an advice  .

Zaini.

Dentist: I got it too. I am glad that if you dont know you dont see it. When I was a lil younger I went to the dentist from the hospital. My dentist said: we can use very painfull treatments (braces???) from China - she was not in for it. I have not done anything for it. From time to time my jaws move wrong:  you hear a strange sound and have pain, but i prefer this. My new dentist did not even mention it. .. she even correct my broken teeth wrong  Thanks you cant see it, but I can feel it. But I am too lazy to search for a new one.

HB 6.1  Retic count 7.8%

What's retic count?

Btw it's a pretty low hgb. I hope he feels well with it.

Dore,

From http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/reticulocyte_count.jsp

A reticulocyte count is a blood test performed to assess the body's production of immature red blood cells (reticulocytes). A reticulocyte count is usually performed when patients are evaluated for anemia and response to its treatment. It is sometimes called a retic count.

Zaini.

Thanks Zaini so much for your support.  Actually i thought once of this. The only thing that makes me afraid is that his body has adapted on this level and is very active very active too. I am afraid if he keeps swinging between high and low HB, this will ''exhauste'' his body.  This is based on my logical understanding, not on any medical advice.  Anyway, i will have to see what the hydrea will do first. Thanks Zaini


Dore
Ahmad is the same too, nothing is observed other than i sometimes see him opening his mouth for no reason and this brought the thought to check his jaws.

manal

Hi Manal,

For the protusion of the jaw, braces are usually applied.  It takes a long time, it needs regular adjustments but it works. 

How much is Ahmad's ferritin ?  (i am asking this because i read this from Andy's posts).

Hopefully the hydrea will raise his hb and reduce the spleen size. 

Is he back to school or on holidays?

Take care
Jade

Thanks Jade, he will finally be back to school on Sunday. I guess if the holidays were longer than this, he will forget everything he had learnt. As i said before, he so much believes that he has learned everything and just going is a waste of time

Anyway, his ferritin was 62 last month

manal

As for now i finished all the checkups, but actually i don't know why i don't feel good. I am really overloaded. Hope to get rid of this feeling.

Manal,

I know what you mean.  I am feeling the same way, we have checked everything out and so far everything looks really good but I feel very overwhelmed with information and perhaps the realization of everything that this disease entails (what all can go wrong).  We did the DEXA today and the cardiac MRI - and to be honest a part of me does not want to know that results.  It is too much information for me and I don't want them to tell me that there is anything wrong with my baby.  The cardiac MRI in July was perfect - so I hope this will be good too.  We also have an orthodontist appt next week.  It is good to get information, but right now I am mentally and emotionally exhausted from worrying, this is all such a roller coaster.    You are not alone, I am experiencing the same feeling my dear.  This feeling usually settles in a few days.

I hope that all is well with little Ahmad, and that he will remain very healthy always.  I hope that hydrea helps him - the docs here talk about it with a lot of praise.  My love to the little guy 

Sharmin